My Story

     I was an "artsy kid" in highschool, was begged to take all the advanced courses in science and math because of my aptitude, but I only cared about drawing and doing things that were fun like snowboarding and playing guitar.

     When I decided that highschool wasnt for me, I left the place and moved to Ann Arbor, Michigan where I lived with my newly married sister and her new husband. I worked night shifts there at a CVS pharmacy until summer came full swing and i realized i had no friends there, and all my friends back home were going to be leaving my hometown for college soon and it was my last chance to be around them so i picked up and moved back home.

      Shortly after the summer ended I realized that all of my friends had left like I had foreseen and by the winter i was being pushed to make a move. I decided I was going to attend the College for Creative studies in Detroit Michigan where I was going to study animation.

     Things were going fine, although i was unsure about the job security of my course of study. I switched my major around a few times until I settled on illustration and by the time I was in my third semester there, i was actually happy. Had a new apartment with a friend, had 3 classes a week, and 4 hours a day of drawing nude models.

     Shortly after the beginning of my third semester, i was in a gas station and started having, what i was told later by the emergency room doctor, a panic attack. It scared the hell out of me and all i could do was call 911 and wait for the ambulance.

     After being told that it was just panic that i was suffering from, they gave me some medicine to calm my stomach and sent me back home. After walking 3 miles back to my apartment i put myself in my air mattress on the floor, "bed," and went to sleep.

     The next morning I woke up so violently ill, that i had to use the downstairs bathroom so my roommates wouldn't hear what was going on. This lasted for two whole weeks where i was not getting any better. You know how when you have the flu or something and the whole day you cannot wait for when the time comes later in the day when you are tired enough to actually fall asleep and wake up the next morning feeling just, a little bit better? Well that never came. each morning was just as bad as the last night and after a week of not eating food, the only thing there was to throw up was some bile.

     After 5 days of this I was mentally broken and begged my mother to come visit me just so I could feel better knowing I wasnt in control of my own fate any more.

     My parents came that same day. The second they laid eyes on my they were convinced of the severity of my situation. There i was, their son who had just flew the nest not a year earlier, laying like a puddle of sick, sad human being on a half deflated air mattress.

     They ask me one time, do you want to be here any more, and i said no. I started the process for the appealing of my enrollment for the semester and then we instantly began packing my things.

     I spent the next few months laying awake at night suffering with stomach pains, nausea and dizziness. Im not going to get into any more mellow dramatic details but lets just say I spent a long year feeling like i was literally, slowly dying.

     All my doctor could say was that i had some sort of intestinal virus and that i was suffering from general anxiety disorder, and all he wanted me to do was to start taking antidepressants.

     I refused at first but at one point i couldn't take it any more and tried one. It made me feel so much worse that i regretted ever taking it for even the one month i took it.

     A lot of testing, and meetings with the doctor and therapists later, i decided to check out one of the self-help books on anxiety. The book offered some good information about anxiety and the such, but mostly all it kept trying to say is that, "you're okay, this can't hurt you, blah blah.."

     The one thing that makes buying the book for 70 dollars worth it, was that it brought my attention to hypoglycemia.

      I read in this book that a lot of people who suffer from anxiety might actually be suffering from hypoglycemia, which can cause all the symptoms of anxiety.

      Anxiety is your body telling you that something isn't right, or that it is in danger, and for me, i always felt that i was actually not right.

      They tell you that you become anxious about things, then it brings these manifested symptoms, but in my case, it was always these weird symptoms that i would feel that would come first and then i would just become anxious about it.

     But im getting off track here. I asked my doctor to test me for hypoglycemia and whabaam... you have reactive hypoglycemia. well damn, that explains quite a lot now doesn't it. I'm still not convinced that it's what causes all of my problems, but it's definintely a big factor.

     With reactive hypoglycemia, when foods high in sugar or carbohydrates are introduced to the body, the body releases chemicals like insulin to metabolize the sugars in the blood stream. in reactive hypoglycemia, the body metabolizes the sugars too quickly, making the blood sugar rise quickly, and then subsequently, fall dramatically. This rapid rise, then drop in blood sugar is what causes all the symptoms of anxiety which include heart racing, cold sweats, confusing, nausea, etc and when you are unaware that you have hypoglycemia, even panic attacks.

      So that is basically where i am as of now. I'm still going through more testing with the University of Michigan endocrinology department to make sure that my reactive hypoglycemia is not induced by such as a pancreatic tumor like an insulinoma. Also im taking antifungal medication to rule out the possibility of an infection or overgrowth of natural digestive fungal organisms. (I'll talk a little more about this at another time.)



PART TWO



I know the last time i was on this site, i was in a different place of understanding. Still trying to figure out what was wrong with me, why i was feeling like i was and why all the doctors in Michigan could only tell me there was nothing wrong with me, physically at least.

Before, i was looking for answers to why i was anxious, what type of diseases or anything at all that could cause this anxiety that i have been struggling with.

I've come to realize that its not un-natural for your body to sense anxiety when its just in a state of, "dis-ease".

It turns out, that i was right. There really is something physically wrong with me, but it wasn't the "oh shit, is that all"? thing that i was hoping for, the one stop, cure all for it. The easy fix that would send me backflipping into the person i was, before all of this started. I dont want to say anything like, i havent gotten better or i havent made progress whatsoever, because it would be a lie. I've come along way regardless of it all.

My last, and first, post ended with me thinking that i was hypoglycemic and could even be suffering from a bacterial overgrowth in my stomach. Well, i was studied and treated for both problems but it turns out that neither were my problem, although i do, under testing circumstances, do have some sort of reactive hypoglycemic reaction, but that in itself is quite manageable.

For the sake of knowing, i talked to my doctor about getting an MRI. He had told me before that when i was in Detroit, i could of suffered from some sort of viral infection called encephalitis. (i know it sounds like some sexually transmitted disease that Christopher Columbus contracted from a sheep, or something like that.)

According to google;   Encephalitis is irritation and swelling (inflammation) of the brain, most often due to infections. Symptoms: Some patients may have symptoms of a cold or stomach infection before encephalitis symptoms begin.

Sounds pretty damn close to the start of all this.

Anyways, he said that this can cause permanent scarring to your cerebral cortex, and out of plain curiosity, i asked him to do the MRI and check, see if there is some scarring and then maybe i have some sort of concrete evidence as to what started this.

The MRI showed no scarring whatsoever, but it did find a marble sized cyst in the center of my brain. Apparently ive had it since birth, and the cause of which is unknown to the medical community. I read somewhere that it might have something to do  a stage of development in the womb where a cell from something like the blood brain barrier gets lost, and stuck somewhere else in the brain, thus causing the body to react to the material, forming a cyst.

Side note: I realize at this time that i have an issue with keeping things short and sweet being that my posts are far and few between. Ill try and work on that in the future, that is if people actually read this and future posts are warranted. well, heres pissing in the wind right?

Okay... short.. sweet... hmm, okay.

The cyst is on, well in/on, my pineal gland. I could tell from the MRI image before the doctors even talked to me, that it was morphed. It was almost as though the cyst started in the end of the gland itself, then ballooned outward into the cranial fluid pocket directly adjacent to it. It looks like if you were to make a fist with one hand then cover it with your other hand, the fist is the cyst and the covering hand is the gland... pretty close even proportionally.

I was kicked back to the University of Michigan hospital in Ann Arbor to see both Neurologist and Neurosurgeons. They both said the same thing as countless doctors told patients all over the internet who have a pineal cyst; that unless the cyst is large enough to impede on the flow of cranial spinal fluid through the brain, causing hydrocephalus, (water on the brain; basically means, a swollen brain.) They say that they are quite common, something about them being found in 40% of autopsies... they never said what the cause of deaths were for the individuals in which they were found. Although they did say that common sizes are under a half of a centimeter... where mine is 1.3 cm in diameter.

Basically, these doctors say that they are unremarkable and necessary to be operated on because of the way in which they remove them. They go through your face, basically removing it and such which is very, very dangerous. because of the lack of hydrocephalus they, and i, agree that their methods of removal, poses an unnecessary risk.

I looked for a third opinion.

My mother found a video of this kid and his doctor on Ellen, yes Ellen. This kid had a brain tumor and this doctor was making huge strides in endoscopic nuerosurgery. This doctor is of a different school of thought from those at UofM and a lot of other places around the states apparently. He says, that even though these cysts/tumors, are benign, and not cancerous, they stilla re in your brain, taking up a place that is supposed to be filled by something else. Something that is not a tumor. They press on parts of your brain doing things that cause symptoms but are never explained by standard medical tests.

okay, back on track here.  Being that im pretty much.. well poor. This doctor offered to take me on as a patient and assess my situation for whatever my insurance company would cover of the bill, which in the end was nothing. He wanted three things done. First was to see if i could get relief from taking Melatonin supplements, (because the pineal gland is believed to regulate the release of such chemical, which regulates sleep and sleep patterns, and my sleep patterns are horrible, and never seem to get more manageable.) Second, was to have a new specialized MRI done, which studies the flow of the fluid in my brain to see if there was any sort of blockage caused by the cyst. Third, to take a medication called Diamox. This drug reduces the amount of cerebral spinal fluid in the brain to see if symptoms can be relieved by such doing. I reacted violently to the medication, and the MRI proved to be "Inconclusive."

So with both tests showing inconclusive results, I am left with a decision. The doctor says that he is fully confident in his ability to take me through this surgery even with the issue of the pineal gland being affected. He says that i have two decisions at this point. yes or no.. simple as that. I either move on and try to manage my life the way it is, or i go to California and have the surgery. In his words he said that is willing to take "a leap of faith" in my case. Because the medication was intolerable, its impossible to tell if removing the cyst will improve my symptoms at all.

at this point i need to make a decision, not today not tomorrow, but eventually i will have to choose. I suppose its not a choice of just, yes or no, its more like, yes, or... maybe someday, because its not like saying no is really an option, just a matter of "maybe someday".

Basically im stuck between a cyst and a hard place.

So thats where i am now.

3 comments:

  1. fellow cyst suffererNovember 9, 2013 at 7:12 PM

    Excellent read. So do you still have the cyst?

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  2. I just found out I have a pineal cyst as well! It seems, if you have to have it removed eventually, that the Skull Base Institute is the best....

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  3. Thanks for sharing your story. I hope you find relief soon.
    My son has what sound like nearly identical symptoms and we just got MRI results showing a 1.7 cm pineal cyst.

    ReplyDelete